Care assessment - having to go through re-enablement services (not what I need)
Hi
I'm just wondering if I can get some advice, from anyone who's perhaps gone throguh this process. I'm going through a care needs assessment, never gone through one before so I'm very nervous.
I have PIP and ESA/UC (both higher levels, both componenets) and am in the support group but never had support/carers etc. In the last couple of years due to berevements, forced caring and stress my conditions which are invisable and fluctuate including but not limited to CFS and ADHD (combined). My CFS is gradually been getting a lot worse and I struggle with basic daily care, and live alone, and have no close family nearby who can help. My brother perusaded me to apply for a care assessment.
I've now been assigned a case worker (who I think is a social worker) and she put in referals for interim care during the assessment with a couple of providers, while I'm assuming the rest of the assessment goes ahead, I thik I've also been refered for an OT referal. I got a call today about an assessment on Sat 12th July that'll take about 2 hours.
The problem is, the services I'm being refered to are re-enablement services - i.e. temporary to help me get better. This sounds great in theory but I'm not getting better, my conditions have only gotten worse as I got older with more stress etc. I'm not happy about this because it's just going to be 'let's get you to do x, y or z' - the focus I think will solely be on meal prep but 80% of the time I struggle to stand to even microwave some rice, I don't want them trying to get me to prep meals, peel veg etc every day. But my brother said I have to go through the process to show thme the help isn't sufficent. This is what happened with my stepdad's dementia - he needed 24/7 care but his social worker kept insisting he stay at home with visiting carers because I lived there and could 'manage' him despite my conditions and that he was making it unsafe (after a long battle with the social worker my stepdad eventually ended up in a nursing home).
I just don't think even if I objected and said renablement isn't right for me that they'd listen, thier goal is to get people off needing care/support.
If anyone has gone through the process to try to get a care plan (my goal) where I can hopefully choose my own carers as I really struggle to trust and have a lot of anxiety in part due to past truama and I don't think I'll have any say/control in if/when renablement visits or what they want me to do - I don't want to feel like a performing seal. If anyone here had to go through re-enablement, or know someone who has, please can you give me some advice how to deal with it? I'm really scared and worried they'll try to 'persuade' me to do meal prep etc every day (if their visits are daily) and it'll just wipe me out - I don't need someone insisting I just need some help to peel carrots and I'll be fine. I need on-going support (re-enablement is I believe 6-12 weeks in total). I'm also scared they'll insist I'm not disabled/sick 'enough.'
I'm really worried and scared. Can anyone give advice, words of wisdom etc?
Comments
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Hi Jenwren
Reablement Services are intended to be for the short-term you describe. If that may not be suitable for your needs in the long term, I suggest these are likely questions you should ask your case (social) worker. It appears that is now a route to longer-term care for some people. You and I have different disabilities and these services should be tailored to fit our individual needs.
In the first few years I needed carers here that process required constant negotiation. My needs, NHS funding processes, and the capacity of care providers have varied. I doubt that's unusual. For a year or two now it's worked like a finely tuned V8.
This was organised between my social worker, the companies and staff who have worked here, and I. To the greatest extent they have provided me with the help I need, but I've had to compromise at some stages. Companies have to organise a limited pool of staff. Carers and I have to learn to communicate, learn where things are, how I like things done, etc.
That you have been awarded the benefits you have demonstrates that you have care needs. That shouldn't even be a question. I encourage patience and tolerance in you, setting these things up can be subtle.
But adequate help should be available to you. Your social worker should be able to assist you getting that.
I expect specialist organisations will exist who offer advice to people in your position. Perhaps an Occupational Therapist at the hospital/medical centre you attend most often may have some advice?
Good luck
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Hi @Jenwren that sounds like a long winded process and quite an ordeal to get to what you need, I'm really sorry you're having to go through it. I haven't personal experience in this myself but hopefully other members who have will add their input. I can only suggest raising it with them when they visit, taking it further if necessary especially if their asking you to push on with things that cause you discomfort. Hopefully you'll get to a position where you can gain something like direct payments sooner rather than later.
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I really feel for you. I’ve been severely disabled all my life and when DLA went to PIP I avoided getting higher rate care as I was daunted by the whole process so for years stuck with less and kept my head down.
I have now a few years ago applied and got the higher rate. But u thick the key to most care assessments is the stay calm ‘hard I know’ have a level of patience that takes the skills of a meditator. Then don’t do or show you can do what youvcanr - don’t justify when challenged just stay with its not possible (even if you could do it the odd day with huge effort). Don’t talk a lot just be cooperative wuu it shout being friendly or trying to over explain.Often there are 2 agendas - need vs finance - so gettting advice and INDEPENDENT advocacy is very useful if you can and have someone on your side with you.
I wish you all the best but try not to panic - the process is what it is and it can take time to get at least some of what you need even if often short of ideal - direct payments is also nit always wast to manage unless you used to employing PAs and care.
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Thanks for reply, I don't think re-enablement will be suitable for me, as the focus is getting people to do stuff themselves so they don't need care/support, but from what I gather I have to go through this.
I've never had carers, a care plan or anything like this so it's all very daunting. Also I've been in denial about my health over the last few years. I lost my mum two years ago (when my health really started declining) and prior to that I was her live-in carer which only made my health conditions worse, then immediately after her death I was forced into caring for my stepdad who I'm not close as although he had carers (mum didn't, which I regret), he needed 24/7 care but his social worker just kept saying 'oh we need to try y or z before we goes into perminant care' even though I knew things wouldn't work. Carers were nice but didn't work for my stepdad, we never knew what time they'd come, and usually it was very hurried visits between 15-20 mins.
I'm worried it'll go the same way with me. I'm pretty sure my health isn't going to get better any time soon and my disabilities won't (they're life long). Problem is I don't 'look' disabled. I've never had help, when I initially got CFS I went to a programe at a hospital but that was cut under austerity and since then I've just been left to manage. I don't even have a regular GP let alone regualar hospital visits (I can't drive, live alone and public transport is tricky for me). I'm just worried it'll be 6-12 weeks of them trying to get me to prepare meals, chop veg etc insisting I can do it. Hlaf the time I'm too tired to stand to microwave some rice!
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Occupational Therapy should talk about equipment etc that will make your life easier. So an example would be you are unable to stand to microwave rice, but a perching stool might enable you to do the task.
The carers can't force you to do anything you feel is too difficult, you can decline politely and say you are too unwell to manage x task without assistance or too unwell to manage it at all.
Just decline, offer no justification or enter into further conversation on the matter.
Have you been in touch with the ME Association?
Try not to get too hung up on the term "re enablement". Look at it as step one of a (probably long) process of getting the help you need put in place.
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thanks for the advice, I just get very anxious very easily. I've never had any care or support before and always just 'got on' but just the last two years it's gotten really difficult because I had to become my mum (she passed away) then directly after stepdad's carer (he's now in a care home) both due to dementia, despite my own helath and I think my body's just not been able to cope.
My brother says not to get hung up on it either - that like you said it's a stepping stone.
No I haven't been in touch with the ME at all. when I was first diagnosed in my early 20s there was a hospital programme that I think helped but austerity cancelled the programme and I've just had no support since.
I think I'm getting an OT too so hopefully that'll help - I'm in a slightly complicated situation because I may have to move this year (my mum's house - my home- is having to be sold due to probate, no negotiaation, and the sale is out of my hands. I have to right to stay until contracts are exchanged but if the sale is quick I'll need to find temp accomodation - on disabiliity benefits (fun!) so I don't want to ask for too much stuff that I can't take with me.
thanks for the advice, I'll check out the ME association. I've really become a hermit the last few years.
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Splendid stuff Jenwren, Occupational Therapists are often a joyful route to all sorts of helpful things. They've changed my life for the better more than once.
Invisible disabilities have become vastly better understood in the last few decades. It should be all about working out what helps you and that should certainly be possible.
I found it helpful to write down the exact reasons I struggle with particular things. Details can be easy to forget.
There's no point worrying ever and my carers do essentially what I ask them to. That's mostly organised in advance but I have choice.
Takeaway food and ready meals are easily available. It seems to me you may be overthinking vegetable peeling. That's up to you!
Good luck
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Thanks for your reply, I'm a worrywort incarnate, unfortuntely. I over think and catastrophise (thanks ADHD) I'm been in denial about my health getting worse and needing care so I'm just scared. I'm hoping an OT assessment will help a lot but I'm a little wary as my home (my mum's house) will be going on the market (out of my hands and non negtioable) probably October so I don't want to get tons of stuff I can't take with me.
I'm much more worried about this re-enablement services as their focus is getting people to manage on their own so they don't need care which sounds awesome, but my CFS has been getting worse over the last couple of years. I'm also a bit twitchy because I went through the wringer a bit trying to get the right care for my stepdad due to his dementia and his social worker who wouldn't accept my stepdad needed 24/7 care by that stage in a home (the guy refused to listne but also was facing a govt drive for dementia people to stay in their homes i.e. to save govt money on care) and kept insisting on trying things that were never going to work just so they could tick a box - I'm just worried it'll be the same situation.
One thing this re-enablement thing do is help you with meal prep (hence the peeling veg comment) problem is I don't have the energy to do meals period, so I have no idea how this'll work out.
But the OT does sound good, thanks for the message
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T
Thanks for comment. I've been in denial about my health getting worse. I only got PIP for the first time in 2023 at someone's recommendation (I assumed I couldn't get it as I got ESA). I'm just very daunted. I had a bad experaince with a social worker over my stepdad's care who refused to listen when I kept telling him visiting carers weren't adaquet and that it wasn't safe for either of us and kept insisting we had to try method x or y when it was obviously not going to help at all.
I'm worried of history repeating I suppose.
Plus I don't like asking for help, or admitting I need it. I'm struggling to learn to advocate for myself as I really struggle with anxiety etc and don't want to 'bother' people. My brother is my only support but he's got his own life and is busy so i'm mostly on my own since most of my family is now dead. I'm planning to be polite but I'm worried if they try to get me to do things despite my pain/fatigue because the re-enablement is all about you learning to do things by yourself. it doesn't really help if your conditions are getting worse and you struggle to do basic stuff. But I'll have to go through the process. I'm just scared.
Thanks for support
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My carers enable me Jennywren.
Please think that's often how enabling works. We don't have to do it on our own…
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Thanks for your comment. My goal is to try to get carers (I've been in denial about my health getting worse) but my worry is about this re-enablement service as that's not about carers. It's basically about getting people independent again so they don't use carers.
It's sort of like I hoop I think I need to jump through to prove I do need carers if that makes sense. I'm just worried they'll say re-enablement has sorted me, plus I've got a 2 hour assessment tomorrow and all they're supposed to be doing is helping me with food which is going to wipe me out.
I had a bad experiance with my stepdad's social worker (he had severe dementia and needed 24/7 nursing care) but the social worker kept insisting we try x or y hen it was obvious it wouldn't work - I'm just a bit worried the same might happen here. Plus I get anxious very easily.
Thanks for your reply
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It's very hard to get local authorities to agree to pay for residential care. They'll do anything and everything not to do so. It's extremely expensive.
My friend was in a similar situation to yours, her grandad with dementia needed a care home, all they would do for 3 years until their hand was forced, is maximum 4 care visits a day and pressured family to call in on top.
They much prefer carers at home as it's so much cheaper.
So I think perhaps you are comparing apples and oranges here 😊
My Mum (multiple existing conditions) had re enablement care last year after a long hospital stay (funded by the NHS for up to 6 weeks), once home the conversation from her case worker was very much, if she is still struggling after 6 weeks more permanent arrangements will be looked at. As it was she was independent again in 3 weeks.
She's currently in Hospital again, another long stay so far 5 weeks (5th admission this year), which has included major surgery, upcoming chemotherapy +minor surgery I feel she will need re enablement again & a more permanent arrangement will end up happening.
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Thanks for your comment. I'm just scared. I have long-term health conditions and disabilities that while they're not medically degenerative like dementia, they have gotten considerably worse over the last few years especially the last two - in part - ironically becuase I was forced into caring roles for my mum and stepdad's dementias. I'm also still a bit distrustful over how difficult my stepdad's social worker (he insisted I could look after my stepdad in between carers, as I lived with him despite all my health issues, had been live-in carer for my mum's dementia and was still grieving)
My issue is that my CFS is getting worse and I don't see how re-enablement will help. My brother worked in care sector and basically said that re-enablement is to get people off the care books. I live alone, can't drive, struggle with mobility and aside from my brother I have no support network, so I'm just really stressed. I'm having a 2 hour assessment tomorrow that will be exhuasting. I've forced myself to manage without help and care for years and I only did the care assessment because my brother has been getting really worried about me and me struggling to do basic self care due to pain and fatigue.
I want to try to engage and be positive but I'm just worried that it might be another case of trying anything first. My case worker seems nice though so far but I'm just scared.
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Please pardon my pedantry, unfortunately it amuses me:
The word "reable" is an archaic term with two meanings. First, it can mean "able to be reaped" or "suitable for reaping" (a crop or harvest). Second, it can mean "able to be taken back," "revoked," or "rescinded". The word is considered obsolete.
Someone was no doubt paid millions by the government to recoin the term reablement. I agree it should be hyphenated otherwise it will be pronounced improperly, but I don't allow that to keep me awake at night. It's not my fault.
Reablement is intended to "help individuals regain their independence and ability to perform daily tasks". Many people are doing so following illness or hospitalisation, but not all.
In some cases people may be completely unable to perform the tasks they did, or they may find them so difficult that it's much better for someone else to help. It very much appears to me a process of establishing your needs, not an attempt to magically "fix" you (to misquote Coldplay). They can't (and shouldn't) expect miracles. At least in part they're there to work what help you need.
The people who organise your reablement are likely to know and have access to all kinds of equipment and aids which may help you with almost any task we could think of. They will have access to Occupational Therapists and experts who know far more about all that than I do.
Between yourself, your social worker, any carers you have there and potentially teams of experts, it ought to be possible to work out what equipment may help you. Whether or not carers will help and how they can help you best. First these people need to establish exactly what our needs actually are.
It can be an exercise in carefully working out which boxes to tick and where. It ought to result in all of you working out what will help you most.
Best wishes to your mum Kimi87.
Good luck all
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I do understand they have to establish my needs first and it has to be a bit trial and error to see what does/doesn't work. To be honest I'm just not in a good place right now physically or mentally and I'm just completely worn down with life events, so I'm struggling to be optimistic. That's on me. It's just felt like I've been alone for a while now and I'm just adjusting in my head to 'oh I'm not OK/not coping' - a bit of denial, grief and depression with mess with your head a lot.
I really appreciate the encouragment and I'll keep my fingers crossed.
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